Child has life-threatening disorder but parents are not giving up

SHE never gave up on her son, not even when he was only a fragile foetus in her womb.

And Ms Tee Bee Ling is not going to give up now, despite daunting odds.

The 35-year-old mother is hoping for a miracle – that her baby boy will survive the ailment he was born with.

When she was 19 weeks’ pregnant, doctors dropped a devastating bombshell.

Her foetus had a congenital heart defect, they told her.

Ms Tee was advised to terminate her pregnancy as her baby would be unlikely to survive for long after
birth.

But she and husband Shaun Soong, 35, refused to do so.

“I was told my baby would die upon delivery. But he has survived so far. He’s my baby of hope,” she said of her baby boy,who has survived for 20 months.

She named him Ayden as she and her husband had planned, after his complication-free and easy birth in
September 2008.

As Mother’s Day nears, Ms Tee, a customer service officer, is praying harder than ever for a miracle.
 
She and Mr Soong, an engineer, are desperate to find a heart surgeon willing to operate on Ayden.

If that is successful, she will then be able to donate part of her liver to her son.

Ayden is now almost two, but he is facing increasingly difficult health challenges.

His liver is hardening and his heart condition has not been corrected.

Baby turned purple
Doctors at KK Women’s and Children’s Hospital (KKH) say that Ayden has five clinical features that indicate Alagille syndrome (AGS), a complex multi-system disorder involving primarily the liver, heart, eyes, face,and skeleton.

It is a genetic disorder that causes the boy to appear yellow and purplish-blue.

“Regardless of his colour, he’s still our smiley son. His smile is very infectious,” said Ms Tee in an interview
with The New Paper.

AGS is estimated to affect one in every 100,000 live births.

Ayden is suffering from severe and complex congenital heart defects and liver disease associated with AGS,
said Ms Tee, who has two healthy children from a first marriage.

Ayden also has a spinal anomaly and a congenital eye defect.

There is no known cure.

It has been an exhausting 20 months for Ayden’s devoted parents.

Since the boy was born, he has been hospitalised no less than four times. Each time, he was warded for at least a week.

Recalled Ms Tee: “Some time last year, both his legs turned a frightening shade of dark blue. We panicked
and rushed him to hospital.”

It is not known what caused the condition, but the child survived.

And for the past 20 months, his parents have had to take him for regular hospital checkups at least two to
four times a month.

His medication, diapers and a specially formulated milk powder for babies with liver conditions, cost them
$1,500 every month.
 
The couple also cannot take him out to crowded places because his immunity is low.

Three weeks ago, MsTee received a letter from KKH saying that heart surgery would be too risky.

Said Ms Tee: “The doctor mentioned they can’t say how many more months my son will remain in this beautiful world.

“Can any mother or parent bear to hear such heartbreaking news that there’s no more hope? On the day that KKH wrote to us, I cried my heart out.

“But my husband and I still dragged ourselves to work. Life goes on and we need the money to pay for Ayden’s medical expenses.”

She expects the bills to be in the thousands.

The couple are fighting for time while they continue to find out more about Ayden’s illness and where he can be treated.

They are seeking a second opinion at the National University Hospital later this month.

Going abroad for options
They have also sent e-mails to doctors in the US and India.

Doctors from Boston and Chennai have offered their help. The US doctors have asked for Ayden’s medical information and reports.

“On Wednesday, we sent over Ayden’s scans and  reports from KKH to the doctors in Children’s Hospital Boston. We are waiting to see what they say. “If they tell us to go over for treatment, we will, if we can’t get help here,” said MsTee.

Doctors at the Fortis Malar Hospital in Chennai have suggested heart surgery followed by a liver transplant.

They have estimated that the heart surgery will cost about US$6,000 (about S$8,400). Ms Tee’s company has
helped to raise $16,000 so far for Ayden’s surgery needs.

“We don’t know how much the treatment in the US will cost, but I have not spent any of the money raised yet,” said MsTee.

But she is determined to do all she can to save her son.

She said: “I am the proud mother of Ayden Soong. I have walked the streets of Singapore with my family while many stared at my son, who is darker than any other Chinese couple’s child.

“I can’t blame them for staring as his illness is very rare.

“The greatest Mother’s Day gift for me will be to see Ayden grow up and setup his own family.”

No liver transplant due to heart problem

Doctors at KK Women’s and Children’s Hospital (KKH) have told Ms Tee Bee Ling and Mr Shaun Soong that their son Ayden has a severe congenital heart problem which may not allow for a liver transplant to be carried out.

His liver is hardening and time is running out for him.

His heart defects are
1. A large ventricular septal defect;
2. A misplaced aorta;
3. Pulmonary stenosis with underdeveloped pulmonary artery – a narrowing of the pulmonary valve opening that increases resistance to blood flow from the right ventricle to the pulmonary artery.

The KKH team of doctors has decided to manage Ayden conservatively, meaning no surgical intervention.